RSV Day 7

Last night Kaitlyn blew her second peripheral line!!! This girl does not appreciate the additional hardware! It really sucked because there was a perfectly good bag of TPN hanging from an IV pole mocking me. So as can be expected over-night with only her reduced rate enteral feeds Kaitlyn stopped moving secretions and her sats went back down. The resident came in this morning and I actually had to argue with him about secretion management. I said that I felt that her lower sats were a direct result of her not being properly hydrated, to which he sort of shrugs his shoulders and gives me the eye roll. To which I say..no really. He still doesn't think that I am making any sense until I explain to him that if Kaitlyn is dry that the thicker secretions in her lungs are not being mobilized, her airways are compromised and her sats are therefore lower than normal!!! When she is well hydrated then the thicker mucus has something to slide up on and when we do a treatment more comes up! Therefore higher sats!

Then he talks about lowering her bi-pap settings to her home settings...to which I said, not until her sats actually improve instead of getting worse!! He agreed ;oP Then he tells me that her chest x-rays that we had done yesterday showed infiltrates mostly in the upper left lobe of Kaitlyn's lungs. This would be consistent with a virus like RSV. At least there wasn't any indication of pneumonia, so for now we are keeping things moving! Then, almost in the same breath, he tells me that we should move the treatments to every four hours instead of every three and that way we cold get more food into her (as we wouldn't have to turn the feeds off so often just to do a treatment). What could I say...I have to get food into her somehow!

Kaitlyn tolerated her first treatment this morning really well. I got a bit of gunk out of her nose, but overall not too productive. So I turn her feeds back on and the PT (chest PT) says that she will be back at two for the next physio. I'm thinking to myself that's too long between treatments, but I also need to feed my daughter. Since her chest sounded pretty good I was willing to try it and see how Kaitlyn tolerated the decrease in CPT. About a half hour before she was due for physio she started sputtering. Tim was here so he coughed her and then started physio. She was pretty crunchy sounding in the lungs, but I wasn't worried. PT would be in soon and Tim know how to manage Kaitlyn, so I headed home. I called to see how she had made out with her physio as she worried me a little with how wet she had sounded before I left compared with how she sounded this morning! Tim told me that she had crashed! She was on even more of an increase with bi-pap settings, needing 5L of O2 to maintain sats. A central line was outright refused as Kaitlyn has a blood clotting disorder. The only type of central line that was offered was a jugular line under general anesthetic (knowing full well that we would never choose this in her current weakened state and respiratory condition!!!!). So a THIRD peripheral line was placed and all we can do is hope that she doesn't blow this!

Tim called back a couple of hours later to say that Kaitlyn had been weaned off of the supplemental O2, but that the Bi-pap settings could not be reduced. Her lungs were still wet sounding but not as bad as earlier. She had her new IV and PPN had yet again been started!

Owen and I were playing on the spare bed tonight before supper. He likes to jump on me and rough-house. He smashed the back of his head into my nose...I heard what seemed like a really loud crunch, saw stars, saw black, then felt really sore with a bit of a head-ache. My nose is a bit swollen and there's a bit of a reddish bump!!

Tim calls me tonight and says that Alexander had vomited twice since he got home. I ask you...what else could go wrong!!! Please keep us in your thoughts.